Thursday, April 29, 2010

This will be super short because Jonah has just gone to sleep (in the crib!), and I'm going to try to sleep when he sleeps. The hoarseness has not gotten any worse, and seems to be only when he cries or is doing something where he's pushing more air. He's mostly silent now as he sleeps. He's taking three to four ounces of Pedialyte by mouth every few hours and seems to be tolerating it okay. They still have that drain thingy on his stomach, but we are clamping it shut for an hour and a half with each feeding, and it seems he is able to absorb more and more each time... which is good. Right now he is just on clear fluids (through his IV and what he wants by mouth), but I think tomorrow we will start with formula.Tomorrow the g-tube education begins. I'm a little apprehensive, but know it will become the "norm" just like everything else has. Matt has gone home for the night per my insistence. The bed is TINY here, so it was either we both cram in the bed (skinnier than a twin) and neither of us sleep, one of us in the bed and one in the "recliner" (being very generous with that description), or both of us trying to get decent sleep by each being in a bed. He'll trade off with me tomorrow night if I let him, but that will all depend on how Jonah's doing. If nothing else, I'll go home tomorrow while others are here and sleep a few hours.Prayer requests for tonight/early tomorrow:- that Jonah will sleep (and be allowed to sleep) through the night.- that the morphine will work at keeping him pain free overnight.- that we can get this IV and drain thingy out AS SOON AS POSSIBLE. (Every time he moves I'm cringing, afraid he's either going to pull his IV out, thus hurting his skin or going to pull on the tube, thus hurting his skin and his incision site).- that he will not roll on his tummy during the night (fat chance)... not because of the g-tube button but because if he rolls over on that drain (sorry for not knowing what it's really called), it may hurt his incision site and/or his skin from rolling on top of it.Thanks for all the prayers. I'll try to update as I can but tomorrow will be crazy with rounds and dressing change etc. I will try to do quick updates on Twitter (right sidebar) if I don't have time to sit down and post.

I just found out about Jonah's surgery. I haven't checked in for several days. I will be saying prayers for him. So glad everyone was so cooperative with you. That is wonderful and I know it helped to relieve some stress for you. He looks absolutely adorable. Like you said, soon the g-tube care will be the norm and then you won't have to worry about whether or not he is hydrated or hungry....I hope this really helps you and Matt and especially Jonah.

Patrice, did they put in an actual MicKey button or did they do a PEG tube? My son had a tube for 6 weeks while the tract between skin & stomach formed and THEN he had another procedure to get the MicKey button. Here's a link to a picture of what his PEG (percutaneous endoscopic gastrostomy) tube looked like: http://www.picturetrail.com/sfx/album/view/17500200

If that is what Jonah has, then he'll have it for about 6 weeks. If he has something totally different, then please just ignore this comment. :)

I'm so glad he came through the surgery well & is doing well tonight. Prayers for a peaceful night for you all!